Touching Lives - June 2005

My Story: Coping with early birth

All parents of small children have their good and bad days. One toddler can be a handful, so Mark and Andrea Guest have certainly got their work cut out with Ruby and Harvey — two lively, chatty two-and-a-half year olds. But Ruby and Harvey made an unconventional, and unexpected, entrance into the world.

Born 14 weeks early, and weighing only 1lb13oz and 1lb 14oz respectively, the fact that they are here to drive their parents to distraction at all puts things in perspective — even on a bad day.

Double surprise

Andrea Guest found out that she was pregnant at the end of March 2002 but got big very quickly — by 8 weeks she was out of normal clothes, and beginning to wonder whether she might be expecting more than one baby. “The day before my twelve week scan I said to my husband, ‘I think you ought to prepare yourself for twins,’ but he didn’t believe me!” Sure enough, the scan confirmed Andrea’s suspicions.

Andrea’s doctor had told her that most twins are born premature, but she had no reason to think that there would be any particular problems with her pregnancy.All her scans were clear, and she felt really well — in fact, she barely felt pregnant.

But on the morning of Friday 30th August 2002, Andrea woke up feeling a bit uncomfortable. “I had been working as normal up to that point,” she explains. “I’m a hairdresser, so I spend all day on my feet, but that morning I did say to Mark that I wasn’t sure how long I’d be able to keep going to work.” ^All that day, Andrea continued to get uncomfortable twinges, and eventually she phoned her doctor, who told her to go to the maternity unit at Bath immediately. She was 26-and-a-half weeks pregnant.^

Andrea was examined and found to be two and-a-half centimetres dilated. The doctors gave her an injection of steroids to ‘oil’ the lungs of the babies. Lungs develop late, and if the babies were going to be born early, they would need help to ensure their lungs would be able to cope with coming into the outside world. The medical staff explained that they would do everything they could to halt the labour as the babies were very premature, and the longer they could be kept ‘inside’, the better.

“I was kept in overnight, and given pethidine, a pain-relieving drug that really calms you down, so when I woke up the next morning I was feeling fine! I thought everything had gone back to normal, but within half an hour I had started losing lots of blood and I was seven centimetres dilated.” There was no going back.

50/50 chance

Andrea was given an epidural, while the medical staff told Mark what was happening. He was told that the babies only had a 50/50 chance of survival, and if they did survive there was a strong chance they may have to live with a severe impairment, such as cerebral palsy. ^For the babies, making it through the first 48 hours would be crucial, but Andrea and Mark could not rest easy until they were able to take them home.^

Andrea’s babies were born by emergency Caesarean. “We were extremely lucky because there were two incubators free at the nearby Neonatal and Intensive Care Unit (NICU). Of course, we didn’t even think about it at the time, but there aren’t always any free incubators, let alone two.” Ruby was first to be born, followed five minutes later by Harvey. “Ruby came out screaming,” says Andrea, “and she’s still doing it now!” Harvey, however, was rather blue when he emerged into the world, and was clearly in distress. A blood clot somewhere inside Andrea had been affecting him, and it was probably this that caused the premature labour.

An uncertain time

The babies were whisked straight into ventilators, and then began several weeks of intensive care. “They had to have a lot of brain scans, but they were all fine, which was very reassuring,” says Andrea, “and premature babies do tend to get infections, so they were treated with antibiotics. Then at about week two or three, Harvey started to get very poorly, and he was given a lumbar puncture [a needle is put into the spine to collect some fluid — Ed.] to test for meningitis.Thankfully it came back negative, but a lumbar puncture can be painful and distressing, even for an adult.”

The babies were in hospital for a total of eleven weeks and two days. However, Andrea was discharged after ten days, so she and Mark spent three months dashing back and forth from the hospital, spending as much time as they could with their son and daughter. Not only was it very difficult for the Guests to be apart from their babies so much, but they had to cope with the fact that the twins were so delicate and often unwell.”There were so many things that you wouldn’t think of that made it really hard,” says Andrea. “For example, I obviously wanted to touch them and stroke them, but when they were very little their skin was so frail, it would hurt them to be stroked.”

Another major problem arose when the babies reached what would have been 34 weeks of pregnancy, and it was time to start bottle-feeding. ^They had real trouble co-ordinating the three processes of breathing, sucking and swallowing that are needed for successful bottle feeds.^ This was a distressing period for the Guests.”We were very worried because the babies had lost a lot of weight before, in the first week after they were born — Ruby went down to 1lb 6oz, and Harvey to 1lb 9oz, which is a lot to lose when you are that little. We were worried this would happen again.”

However, thankfully their little lungs and mouths got the hang of feeding before they started losing weight again, and by 37 weeks the Guests were ready to take their babies home.

Before they did, the NICU provided a half-wayhouse for the Guests so that they could start experiencing life as a family while remaining close to expert medical help. “There is a little flat just opposite the NICU where families stay for a few days just before they take their babies home, to get used to them. It’s not that I hadn’t bonded with my children — the staff at the NICU really encourage you to get involved with feeding, changing and so on. But it’s a way of breaking you in, knowing that if you had any problems you could buzz across to the staff and they would be there to help.”

Extremely lucky

Since leaving hospital the twins have gone from strength to strength. They do both suffer from asthma, which may be a result of having been on a ventilator for so long. But the Guests know that their children have done extremely well considering what kind of long-term ill effects they could have suffered. This is part of the reason why Andrea and Mark have decided not to have any more children — there’s a high risk that Andrea would give birth prematurely again. In any case, they’ve got their hands full with Ruby and Harvey.

“We live a very hectic life!” Andrea explains. “We do a lot with the children. We take them to toddlers, to a music group, and we belong to Twins Club! A lot of the babies there were premature — but Ruby and Harvey were the earliest!” Although Andrea doesn’t see her children as having the special bond you see in some twins, especially identical twins, they do get on very well. “They’re just like a normal brother and sister — very happy, friendly, and bubbly. We think we’re extremely lucky.”

^While Ruby and Harvey may now seem like any normal 2-year-olds, Andrea is aware that they are effectively doing everything 3 months early.^ They’re due to start school in September 2007, but it may be a while yet before the family go shopping for school uniforms. “We are going to appeal against sending them to school that year,” says Andrea.”They would be the youngest in the class anyway, because their birthdays are in August, and added to that they have had this difficult start to life. I think they would struggle.”

Having been through such a traumatic experience, Andrea is particularly supportive of any research, like the Touching Tiny Lives Campaign, which might help reduce the likelihood of premature birth. “I don’t think anyone who hasn’t experienced it could imagine how it affects you. For those first eleven weeks, we didn’t sleep properly at all.We’d leave the hospital late in the evening, then we’d call last thing at night to check everything was alright, and then again first thing in the morning. It’s heartbreaking — I wouldn’t wish it on anyone. At the time, you just cope with it, but now I look back and wonder how we got through it.”